Life Altered by Multiple Chronic Illness Diagnosis

Chronic illness has completely altered my life. I went from a two sport varsity athlete in high school to a person who functions at a pain level that would leave most people bedridden. Now life has been consumed by handfuls of pills twice a day, at least one doctor’s appointment a week, constant pain, exhaustion, and more difficulties. After struggling for over a year to get an accurate diagnosis I finally ended up with several: Rheumatoid Arthritis, Sjogrens Syndrome, Graves’ Disease, Fibromyalgia, and Irritable Bowel Syndrome.

Seeking Sobriety and Answers

I can’t tell you when the pain started. I spent years as a full time heroin addict, and while I was using I wasn’t in pain. But every attempt to get sober left me in agony even after withdrawing from the drugs; which only lead to relapse after relapse. Every attempt at sobriety would lead me to a different doctor for an answer, but every doctor assumed it was Post Acute Withdrawal Syndrome. I knew in my heart there was something seriously wrong, but I couldn’t find anyone who believed me. Eventually I managed to get sober and continued my fight for an answer to my pain. Every doctor I saw just assumed I was looking for drugs, even when I told them I didn’t want any narcotics. I went from doctor to doctor looking for someone who believed me and would help me finding an answer. I finally found one, over a year after I began my search. A few months later I got my answer. It came with a laundry list of health problems.

Chronic Illness Diagnosis Too Much to Bare

A few weeks after getting diagnosed with fibromyalgia and rheumatoid arthritis I landed in a mental hospital for a suicide attempt. I was so overwhelmed by the idea of dealing with pain everyday for the rest of my life that I assumed I couldn’t do it. I didn’t really want to die, I later realized, I was just afraid of a life of constant pain. Fear is a completely overwhelming emotion and I was terrified thinking of the kind of life I was being forced to live.

Struggling to Stay in School

Throughout all of this I struggled my way through college. I am currently studying the prerequisites to get into the nursing program. Just this past semester I developed a serious infection that was sensitive to only five antibiotics. As it turned out I was allergic to four of them. I spent weeks covered in a rash because of constant allergic reactions. I ended up with a PICC line to take the final antibiotic that would work, which was only available as an IV antibiotic. It took three weeks on that medication to heal. Thankfully it worked and I was finally free of the infection. But throughout all of that keeping up with classes wasn’t possible and one had to be dropped.

Immunosuppressant Therapy for Chronic Illness

Once I was free of the infection I could start my treatment for the Rheumatoid Arthritis- it was an immunosuppressant. This medication, which is also used in chemotherapy, makes me sick for at least one day, usually two. Once I realized this fact my mental health took another turn for the worse. This time going to the hospital was not an option. It was only a few weeks away from finals and past the date to withdraw from the class. The doctor upped the antidepressant which caused suicidal thoughts. I decided that if the next change my doctor made didn’t help I would take my parents wrath and go to the hospital for help. Thankfully the change the doctor made worked. I was no longer suicidal. The depression remained as a hard consequence of chronic pain.

Looking for Positive Side of Chronic Illness

Everyday is a struggle to keep looking for the positive when it all feels negative. Sometimes I think the light at the end of the tunnel is just a train that’s going to hit me at full speed. And sometimes that is what it feels like. But I searched for a group of people who understand the kind of struggles I have. Thankfully I found a few and began to make friends with others who have similar challenges. I began to talk to my family members who also struggle with chronic illnesses. I created a beautiful new relationship with my mother who struggles with almost the exact same situations as me. Anyone can find help through The Unchargeables Chronic Illness Support Group.

Chronic Illness Self Care

I realized that I can’t look at my whole life at once but instead I now try to take it a day at a time and go easy on myself. I can’t control what may or may not happen in the future, but I can control what I do today. And today I choose to allow my doctors to attempt to put my body back together while I focus on what I can do to better myself. I do what’s put in front of me: run the errands, study, go to appointments, and on and on. When things get overwhelming I do some self-care. It’s hard for me to do self-care because I tend to forget about it with everything else going on. I love taking baths and writing poetry and that’s what I try to do as often as possible. Life is still hard, but every day I do something, even if all I can do that day is get dressed. I’m grateful that today I have people in my life who understand my struggles and love me through them.

About the Author

Chris Thoman is 23 years old, a college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. You can follow Chris on Instagram at https://www.instagram.com/foreverandalwaysarebel/

I am about to make a bold statement here, but bear with me: being diagnosed with Crohn’s disease has actually improved my life for the better. No, I am not delusional. I am also not blind to my bad days or the tests results that come back not as optimal as I had hoped. It’s getting through these rough days that bring me to the conclusion that Crohn’s disease has some positive side effects. Here is how I came to this understanding.

The Bad Days Make Me Appreciate the Good

If you have a chronic illness or any kind of chronic pain, at some point you have probably dreamed about a life in which you don’t need to think about your condition every day.

For example, with Crohn’s disease I need to consider what food options will be available if I’m going to be out all day. I may need to carry snacks or even meals in a cooler bag. If I’m in a flare I’ll want to make sure there is a bathroom nearby. These things can be a drag sometimes, but they are necessary.

When I am feeling great and flare-free, the appreciation I have for my high energy and working digestion is overflowing. It sounds funny to be grateful for normal bowel movements, but it’s true! I don’t let the miracle of these healthy days get past me without being grateful and enjoying them.

I Am a Voice and Example to Help Others with Crohn’s Disease

You don’t need to be a blogger to make a difference, but that is where my energy funneled several years ago. Yearning for a way to connect with other people with Irritable Bowel Disease (IBD) and especially those using nutrition to boost their health, I went online!

Over the years my blog readership has grown and I receive messages from people who are grateful to see my story as it is helping them or a family member. It doesn’t seem like I am doing much; I just share my story as I go. But every time I receive a message like that I realize that seeing me go through a situation whether it be a health challenge or a successful win, gives hope and inspiration to others on a similar journey.

There is power in being a step or two ahead of someone else and showing them the way. Even if you don’t have an online presence, you can support people through in-person or online support groups or find a way to mentor someone newly diagnosed with your condition through a hospital.

I am Constantly Learning

If I had never been diagnosed with Crohn’s disease, my life and the lives of my close friends and family would be not have been enriched in some ways.

You see, after a short while of living with Crohn’s it was clear that the medications and diet advice were not working for my body. I could not maintain a baseline of health and rather kept slipping up and getting sicker and sicker until I landed myself back into the hospital. Thanks to my determined parents, we kept searching until we found more options.

That led us down a path of “alternative medicine.” This was my saving grace. A drastic diet change proved to be beneficial almost immediately. Eleven years later, I have developed not only a great interest in how food interacts in our bodies (which led to a new career for me) but I’ve gone even deeper into using non-toxic clean and personal care products and of course, sharing this information with my loved ones.

In this way, I feel I am much, much healthier than I was before my diagnosis when I ate a lot of junk!

When new research comes out about gut health, environmental factors involved in disease, genetic predispositions, etc., you can bet I am all over it! Educating myself makes me feel empowered. When I am empowered I am in control of how I deal with my health and I can make educated decisions. I never had an interested in health or disease before my diagnosis. I see this as a blessing to communicate the amazing findings being published every day!

Rockin’ This Crohn’s disease thing

In Summary

I won’t deny that chronic illness doesn’t bring challenges. There is pain, medical appointments and expenses, and sometimes limitations to how we live our lives. But, I believe there is something good to be gleaned from any situation. With chronic illnesses being a major part of our lives, I think there is a great opportunity to use it in a positive way.

Whether you share your story with others, go into research, be an advocate, or simply be a good example of how to be grateful in tough times, we can all use our chronic illness in a positive way.

Can you think of one way your chronic illness has resulted in a positive side effect? Share with us below and let’s inspire each other!

Alexa Federico

Alexa Federico is the owner behind Girl in Healing, a blog focused on a real food approach and intentional lifestyle to thrive with Inflammatory Bowel Disease. She has an online practice as a Nutritional Therapy Practitioner to coach others to use nutrition to be well. She loves books, podcasts, walking outside, and warm sunny days.

I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.

“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”

I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.

As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.

Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.

Well.

For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.

Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.

“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”

I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.

The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!

I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.

“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”

Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.

I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.

At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?

“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”

But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.

Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.

Wow! Has it really been three months since my Total Abdominal Hysterectomy and Bilateral salpingo-oophorectomy? It’s hard to believe it’s been that long! I’ve been on a roller-coaster for a bit, trying to get the meds right and trying to get my life back in order. I told myself I’d post more regularly or write more when I felt up for it so I could at least upload something semi-regularly.

Working on Back and Leg Pain

I recently purchased a white board that I plan on using to help motivate myself and keep on task with writing. I’ve also gotten busy since my birthday on the 28th of August with a promise to myself to get in better shape. The past 3-ish weeks I’ve been going to Physical Therapy for lower back pain and some leg pain. Well, the leg pain is decreasing and the back pain is more centralized, which is apparently good. I’ve also started some easy beginner yoga stuff I found on YouTube (I love yoga). Walking is also another thing I’ve been doing a lot of, but only when my back and left leg will allow. Being a young person trapped in a body that wants to act 50ish years older than it is REALLY (pardon my French) SUCKS!

Life Has Been So Much Better After Hysterectomy

After we bumped up my Premarin to 0.45 mg in July, life has been so much better. My mind has been clearer and I’ve had so much more energy. Another positive to note is my skin is less dry…or maybe that has something to do with my new moisturizer? Anyway, I’m back to feeling a little more normal and still not regretting my decision to have a hysterectomy —not suffering every day is amazing. No more excruciating, debilitating cramps is an answered prayer. I do still have “baby fever” like none other, but lucky for me I have friends with kids I can gush over.

If you remember, I mentioned my surgeon had cleaned up scar tissue from previous surgeries when he removed my “lady bits” during my hysterectomy. I think that has also impacted my hydrocephalus. My body is more readily absorbing the cerebrospinal fluid that travels down my shunt to my abdomen because the scar tissue is no longer in the way of that process. This affects the precious pressure balance between my abdomen and my head.

Following Up with Other Doctors

I’ve also started with my annual and semi-annual visits to various specialists. I saw my PCP at the end of last month and talked to her about CBD oil to hopefully get me off anti-anxiety, antidepressant, and nausea medication, or at least lessen my use of the anxiety and nausea meds. I’m getting sick of all the pills.

I’m going to make sure my other docs don’t have a problem with it because it has helped! Also, I see my Endocrinologist in a couple months and need to talk to him about a supplement I read about. If he agrees with me to try it, the reviews make it sound like I may be able to get rid of two or three more meds.

Later this month I see my Neurosurgeon and he will hopefully agree to lower the pressure on my shunt valve; I’m having symptoms that suggest it needs to be lowered. After that, I see the Neurologist which will be quick and painless. Then I’m done for the month! Then to finish the year’s appointments only to start again in January!

Hello, my is Kate and I’m missing part of my brain. That’s my ‘go to statement’ when I’m told to introduce myself and to name one interesting thing about me. It usually stops people dead in their tracks and I get statements like, “but you’re so NORMAL” and “I never would have guessed”
Well, it is all true; I was born with a congenital birth defect called Dandy-Walker Syndrome. Now Dandy-Walker is referred to in many different ways but they all basically refer to the same thing. I’ve argued with other patients over this so I just back off but from what I have read it’s all the same. Dandy-Walker Syndrome is a condition in which a baby is born without a portion of their Cerebellum. The cerebellum is located at the base of the skull and is important because it is involved in voluntary motor/muscle movement and things like but not limited to:
• Movement
• Sensory processing
• Olfaction (sense of smell)
• Language and communication
• Learning and memory

DWS affects 1 out of every 2,500 live births but the actual number of individuals affected is suspected to be much higher because of how much the syndrome varies from individual to individual.

My parents got this diagnosis for me when I was 5 days old and my mom was first able to hold me. You see I was born 5 weeks premature and wasn’t breathing. Mom and I were loaded into an ambulance (which had to stop twice because I stopped breathing) and sent to a larger hospital with a NICU, there I spent my first 16 days of life. While in the hospital during those first days I had a CT scan that showed the Dandy-Walker Syndrome and it also showed that I had hydrocephalus.

Hydrocephalus is an abnormal buildup of spinal fluid in the brain. It affects 1 out of every 500 live births, hydrocephalus can also appear later in life because of illness, injury, or the way the body reacts to aging. Anyway, in my case the Dandy-Walker Syndrome actually caused the hydrocephalus. With most DWS patients the 4th ventricle in the brain is enlarged preventing the flow of spinal fluid and causing a buildup to occur.

When I finally went home my mom started doing PT with me. Before she passed away in 2006 she showed me the folder of exercises she did with me every day it was at least an inch thick maybe larger!

When I was 4 months I was finally at a weight where the surgeon felt comfortable operating. After my first shunt placement I spent 3-4 days in the hospital at Children’s Hospital of Michigan. An interesting fact I recently learned: the surgeon who did my first surgery was the first Black Neurosurgeon in the US as well as the first woman Neurosurgeon her name is Alexa Canady, MD and I would love to meet her. My parents told me stories about her growing up, but I digress.

After that surgery I continued to struggle, according to my parents, to hit normal milestones. I started to walk then I got glass because when you have hydrocephalus your eyes are normally affected. Then I had four eye surgeries to tighten and loosen the muscles. In the end I didn’t end up walking till I was about three.

The rest of my childhood was pretty normal, my parents impressed on me that I had a shunt and had to be careful, but that was about it. I did normal kid stuff except I didn’t do the gymnastics stuff in gym class ever. When I got older I helped on the farm baling hay and straw, throwing off the wagons and stacking in the mow.

When I was 13 I had my first revision and I was no longer allowed to help on the farm. I then got excused from gym because kids are mean, they would throw stuff at my head. Not really safe to be around plus I could feel the shunt move every time I ran, which was very painful. The rest of junior high/high school was spent in and out of hospital having revisions. It made life, shall we say, interesting? With my first revision I was out of school from the end of October till January because I got a shunt infection and well you can’t go to school with an IV pole….

I graduated high school on time with my class and started at community college. My first year at school I ending up having an emergency surgery for a blocked shunt. I woke up from that surgery completely paralyzed on my left side. Working to regain function was so much fun! By Thanksgiving that year I had graduated from a walker to a cane, and was walking unassisted in the home. By New Year’s I was going out without the cane but still used it a lot (It was my baby blanket).

I went through a number of surgeries my first two years of college. When all was said and done I ended up transferring to a school three hours away from most of my family and didn’t end up having surgery again until my last year on campus. That was quick and easy in and out surgery and even though I wasn’t back on campus I worked on my online classes and papers I had to write waiting for the staples to come out.

After my graduation in 2014, with a BA in Pastoral Ministry, I skyped into my final 2 classes for my Hospice degree while completing an internship at a local hospice, it was a great experience. In 2015 I started going back in Children’s Hospital of Michigan and seeing a Pediatric Neurosurgeon who gave me a new programmable shunt and I had thought put an end to my problems. In July of 2016 after continued problems with my shunt and going back to using a walker because of being unsteady on my feet I sought out the help of the doctors a Michigan Head Pain and Neurologically Institute. They diagnosed me with Benign Intracranial Hypertension, which is funny because I have a shunt… I’ve recently started treatment and am hoping to start living the life I’ve dreamed of working with hospice or hospital patients taking care of their spiritual needs.

As Spoonies, I know we can all appreciate the energy and sometimes struggle required to things normies make look so effortless. Well, it took two days and ALL my spoons but I did it! I’m officially moved into a new barrier free apartment. The move wasn’t that horrendous or that bad in all reality. All I did was move from an upstairs apartment to a downstairs apartment within the same building. I really lucked out, unlike the people who have had to move further to be in an accessible home.

Frustration

This whole move/pushing for an accessible apartment started over the summer as I started having more and more problems with my balance and going up the stairs was becoming increasingly hard for me to do. I kept bugging my landlord telling him I needed an apartment in a building where I did not have to use any stairs. Finally in March of this year I found out the barrier free unit in my building was empty. I went to the manager of the complex and requested a move. The fact that I was requesting a barrier free unit meant I had to do a lot of paperwork and have my doctor fill out papers stating that said I would benefit from a barrier free unit. She even went so far as to write me a script for a walker. The walker has helped me so much and helped me to feel so much more stable on my feet! She also wrote for me to get a hospital bed which has helped with my headaches because I can sleep at an angle that helps my shunt to work better at night.

The move

Finally a month after I turned in all the paperwork I finally hear back! My landlords manager approved my “transfer” to the barrier free unit. I was over joyed; finally, my struggle with the evil stairs was coming to an end. I enlisted the help of a couple from my Church to help me; my dad told me he could help me the next day. So, I asked the husband if he could be available on that day and he could.
When Monday the 25th of April came, I was excited. I got up and finished some packing. After about an hour of that, I went to sign my papers. By the time I started hauling boxes (small, light boxes) I was done, this Spoonie tired herself out faster than she thought she would. Around noon the husband called and asked if I could use some help. “OF COURSE!” with his help we killed it. All the small boxes down stairs and some big ones.

He moved my living room save the furniture, my bathroom, linen closet, after about 2 hours at work on that task, he went home to leave me to unpack and decided where I wanted stuff, when his wife came over after she got out of work, she found me on my floor finishing putting my linen closet in order. I had made quick work of the bathroom so everything was kind of put away. We took a couple boxes back upstairs and started moving my kitchen stuff downstairs and putting that away. In no time, we had moved that and a few other things downstairs, it was getting late so she asked if I was hungry, “OF COURSE!” so we went to a small restaurant and got some dinner, chatted with people from our town, and relaxed. At that point I was running on adrenaline and worry over hitting my head on the freezer door while cleaning out my fridge. The joy of having a shunt, always waiting for the other shoe to drop and end up back in the hospital.

When I got back to my new apartment, it occurred to me I couldn’t sleep there because my new hospital bed hadn’t arrived like it was supposed to, so I went upstairs and slept in my Lazy boy because I had already stripped my bed and was too tired to remake it. I slept surprisingly well and when morning came, I did not want to move! I was sore, so sore!

Day 2

The second day of “the great move of 2016” started with me taking a few small things downstairs then waiting for the delivery guy to bring and set up my new bed. While waiting I unpacked some more things and tried to organize as much as I could. Between you and me I hate, hate, HATE clutter especially my own. As I did that I also made a list of organizing products I wanted to purchase to make my life easier. Most of them I had been thinking about for a while but I hadn’t added to my Amazon wish list or even attempted to purchase. I was still really tired and probably should have been attempting more sleep.

Around eleven a.m., the delivery guy finally showed up and setup my bed. While signing the paperwork my dad showed up and the guy walked him through the bed operations while finished. All I can tell you is when I saw that bed my eyes lit up because I could just imagine the relief of being able to wake up without headaches or a stiff neck because I fell off my mountain of pillows.
Shortly after my daddy arrived I called the guy from my parish who had helped me the day before and him and my dad made quick work of moving the rest of my stuff downstairs into my new place. I was really surprised with how fast it went, then again when you look at the amount of stuff I actually have I don’t have that much. Anyway, after they finished moving stuff down I worked on putting drawers back in my dresser and made my bed with my new purple sheets and my Spoonie pillowcases (which can be purchased at https://www.gearbubble.com/gbstore/spooniesforlife). After I bid farewell to the guy from my church me and dad went out for food then he dropped me off back at home and I fell asleep while he took my double mattress to my grandparents’ house so that my sister can use it in a couple months when she moves into a place of her own. The next day I stayed in my bed all day my legs where so sore and my back hurt so bad that I needed my walker to get around.

Recovery

While lying in bed for two days only getting up for food and bathroom I did a lot of thinking about how nice it was to finally be in a place where I could have my walker ALL the time and actually USE it when I need it. I also reflected on how much I hated going up and down the stairs and living in the font of the building and listening to all the noise from the parking lot. It really is a blessing to be in the back of the complex, things are quiet! Quiet is nice when I’m having a bad head day. The new bed is also an awesome help, here I am a week out and I’ve only woken up with one headache which is way better than before and no neck pain! I’m in love with this bed! I’ve never met a comfortable hospital bed but this one is pretty nice and I can’t complain no back pain or any other pain at all!
While the move was stressful and even thinking about moving all my stuff was stressful. However now that the move is over with and the last box is unpacked and things are finally going up on walls I’m so much happier and I’m sure that this will help my health so much because I don’t have to worry about blacking out climbing the stairs or getting dizzy and falling down the stairs! So excited to spend the next couple years down here in the back of the building, now to get the rest of my life in order, so many things to do so little time!

If you would have told me 8 years ago that my life would take a drastic turn and if I were to look ahead I would see me in the state I am now, I would have told you that there’s no way I would allow this kind of struggle to go on day in, day out until it became as natural as breathing. I would have told you that I would never be able to survive the level of pain, confinement, fear and change that being chronically ill brought with it. Basically, I would have said that I couldn’t handle living in that way; the struggle would be too great. Too difficult. Too costly.

Eight years ago, I was a full-time member of the working class, I was active and fit, I was a “get out there and live” kind of woman. On any given weekday you could find me loving my job (I was a legal assistant for a local real estate attorney) and juggling household chores with the dexterity of a gifted circus act. I lived in a split level home so I was always scooting up and down the stairs with ease- sometimes skipping steps in my race to get to where I was going.

On any given weekend, you could find me out on nature, didn’t matter the climate- hiking, jogging, walking trails, sledding, snowshoeing, tennis, biking… you name it, I did it all- and never even had one thought of “What would my life be like if I couldn’t do these things?” And probably the reason I never thought that was because there was no reason to- I was healthy. Cinderella sang it best (now I’m showing my age, lol) and it’s very true- you don’t know what ya got, til’ it’s gone.

A lot has changed in eight years. And I’m still trying to cope with how drastically it has.

On any given weekday these days- you can find me in bed. Propped up with pillows, stinking of menthol, meds within easy reach, surrounded by books, coloring pencils and adult coloring pages, my journal and the laptop I’m currently typing on. I am most often in pajamas or lounging/yoga pants. Not because I’m too lazy to change- I often change a few times a day- but because it’s the only clothing that doesn’t hurt my sensitive skin. My typical morning begins with slow and painful steps to the bathroom, which is less than 10 feet away. Every single muscle and joint hurting and sore and aching. Always.

The rest of the day is spent by measuring time against what I’m capable of doing. For example- a typical dish-washing episode can be an all day process because I have to stop frequently to get off my feet. The pressure on my back and hips makes it impossible to stand for longer than just a few minutes before I need to grab a seat and ease the pain. If I have more than just a few dishes… well let’s just say I am perpetually washing dishes.

If I have dusting, vacumming or any other chore on the list, it gets broken up by frequent breaks. I actually have to plan to clean my bathroom, because it takes everything in me and I know that once I start, I have to keep at it until it’s done. Kneeling and stretching to scrub a tub is akin to being mauled by an angry bear.

And I know that sounds exaggerated, b/c how would I know what that feels like- but when your muscles feel shredded and your body feels like it was repeatedly slammed against a hard surface…you get the drift.

My weekends are nothing like they used to be. Whereas before I would be out and about and experiencing the joy of being active, now I am consistently handing my husband a grocery list and apologizing for not being able to go. We live in a 3rd floor walk up apartment, and those stairs may as well be a mountain. My husband gets all the recognition he deserves for “getting” why I can’t go along with him, but I know it must get annoying to constantly be the one taking care of business.

Some days I am driven to frustrated and helpless tears because of how cut off from the rest of the world I feel. While I know that it is not my fault that I am chronically ill, I often push myself past my coping ability simply because I can’t stand feeling idle. I’m at the stage where I have accepted that I will always be in some type of measurable pain for the rest of life. The acceptance itself was a long and drawn-out battle, and some days, even though I have accepted it- I still shake my fist and rail against the injustice of it all.

Do I feel sorry for myself? Yes. Sometimes. I think anyone who suffers from Chronic Pain has moments where we are self-contained and all we can think about is the unfairness of it all. I also think that is completely normal. Our lives have been thrown into a blender and the resulting mix looks like nothing we’ve ever seen before.

Stuck in bed? What the hell is that?

But lately I’ve been trying hard to look in-between the difficult moments to find the sweet ones- and stop beating myself up for the fact that I am changed. I am not the active and fit suburban soccer Mom I used to be. And that’s okay. I still have the same heart. The same soul. They may be a little worse for the wear but they still function. I can still love. And admire. And respect. And enjoy. And count blessings. I don’t need perfect health to appreciate the good things in life. In fact, had it not been for some of the more difficult aspects of being chronically ill, I don’t know if I ever would have paused to ponder the notion that life can be appreciated in all manner of ways. I’ve learned a lot about myself on this CP journey. I am blessed in so many different ways and I hope I never lose sight of that.

Eight years ago I would have said I couldn’t survive living the kind of life I lead now. Now I see how incredibly blessed I am and I end every day by thanking God for another day to live, to experience, to love, to laugh, to exist. Even in this broken down body- I exist. And I hope I never lose sight of how precious that blessing is.

Bio:
Kathy Marie is a happily married 43 yr old Mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”

I just decided to leave yet another “support” group for chronic pain… because all too often there is a subtle, and sometimes not so subtle- tendency to try to one-up another in terms of pain. “Oh I have EDS- you don’t know pain until you know EDS pain” “Well, I have CRPS, you don’t know pain until you know CRPS pain” “I have Fibro- and that trumps EDS and CRPS- I’m in pain 24/7” “Well I’m in pain 25/8- beat that” and on and on. Gawrsh it’s so tiring and annoying!

Experiencing Pain

Pain is pain. All of us with CP conditions know pain. We know it intimately. We experience pain levels that would have “normal” people dropping to the ground in agony. And does that make us better than anyone else? Uh no- it doesn’t! I’m so tired of the constant battle to compare and be the #1 Pain Warrior. Just battling the pain alone makes me exhausted. Why should I have to “prove” my pain is “more” than anyone else’s? Frankly- I hate that ANYONE suffers from chronic pain, at any level.

I hurt. I hurt a lot. All the time. In fact, after being awake for more than 72 hours dealing with a flare, I crashed yesterday and slept 17 hours. And I’m awake now- still feeling tired. Still hurting. And that doesn’t make me better than anyone else. It’s just my reality. And I am positive that other CP sufferer’s realities are just as painful, just as tiring, just as depressing. I pray for all who hurt. And I pray that we can be more aware of one another’s battles, and just wish each other comfort. Recognize, validate, support. There’s no possible need to be “the best” at it.

Pain is Life-Changing

I’m sad that it seems that one of the constants of dealing with CP is negativity and competition. I really hope to change the stigma that is attached to CP through my writing- maybe I can’t change the worldview, but if just one person says, “Wow, I never knew pain could be so life-changing” then I have done my job.

Yes, pain IS life changing. And a good amount of that change is scary, and dark, and horrible, and maddening and lonesome. But some of that change- some of it is good. And precious. And miraculous. And life affirming. And when you think of it in those terms, it doesn’t seem quite so competitive, does it? Instead, it becomes a very personal and meaningful way to own your pain and apply what you have learned about it to other areas of your life.

How I Cope

I journal daily- sometimes poetry, but it’s mainly free-form journaling- just whatever comes to mind and let it all out; and lately I’ve been journaling ALOT about this Chronic Pain journey I have found myself on. Just the other day I leafed back to the beginning of one of my journals and I read something kind of similar to today’s frustration. That journal was 6 years old.

I have taken a huge leap of faith and begun my own blog, “Blessed- My Chronic Pain Journey” on Facebook, inspired by the Spoonies For Life Support Group that I am a part of. I’ve been writing forever, but I always poo-pooed the idea that it was ever “good enough” to publish. I posted in the Spoonies support group a shorter version of what you are reading now, about my decision to leave another Facebook support group due to the sense of one-uppery (is that even a word lol? :-p ) and competition among its members.

A fellow CP Warrior and writer, Tina Barzano, encouraged me to write an article for the SFL website… and then it was like a cosmic explosion happened and I realized that I could use all this life-changing pain for the greater good. I hope that this article and my blog inspires others as wonderfully as Spoonies For Life has inspired me. I find it amazing that at age 43 and at the most challenging time of my life, I am experiencing the joy of rebirth.

I firmly believe this all happened for a reason- my post, all the wonderful supportive comments, Tina’s gentle persuasion; I’ve been searching for some meaning to my CP journey, a reason as to why I’ve been cursed with such a life. After this experience, and the wonderful responses I received, not only do I think I found that reason- but I’ve also changed the word cursed… into blessed.

Namaste, dear ones. Thank you for inspiring my daily and hourly- and I wish you all pleasant days and peaceful nights.

Bio:
Kathy Marie is a happily married 43 yr. old mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”

Hi my name is Stacey, this is my story of life with adenomyosis. 18 months after having my second child(at 21 years old) I started getting heavy periods, not just the usual heavy, but to the point I was sitting on the toilet for half an hour as I was too heavy for sanitary towels or tampons, shooting pain during and after sex(with awful cramps) and spotting after sex too. I had scans and blood tests and nothing was showing up. I ended up having the mirena coil, then after A year my partner and I decided to have a 3rd child. After having our little boy, my periods seemed to never stop, I was heavily bleeding 21 days at a time with a 4-5 day break! The pains could throw me to the floor. I had a feeling it was endometriosis as I’ve heard so much about it. Anyway, after going for yet another scan they see that I had thickening of the uterus wall. Which led to my diagnosis of suspected Anenomyosis. The problem with Adenomyosis is that the only true diagnosis is a hysterectomy! You need a very good sonographer who is trained in what to look for to be able to diagnose this disease. Luckily 2nd time around I had one. I am currently on the mini pill and this is helping with my periods (now every two weeks at 5 days long but I’m happy with that after what I’ve been through!) but the pain is just as bad. I also have IBS which from what research shows is very common with Adenomyosis.

Adenomyosis was originally called Endometriosis interna which means endometriosis inside the uterus. The only issue with it being inside, is there is no cure other than hysterectomy. No way of getting rid of all or some the nasty symptoms the only choices are the pill, mirena coil and trailing injections. Being 23 I am not allowed to make that choice of a hysterectomy. Even with 3 children and deciding we have completed our little family. I am constantly tired, run down and in pain, but this is not enough for any surgeon to help me so young. This disease can start at early teens the start of your menstrual cycle or after you’ve had children or even surgery. Unfortunately not enough awareness or research is out there to say for definite what causes this. All we know is if you have this, you’re likely to have endometriosis too. I only know so much, I’m sure I have missed out an awful lot so please bare with me! I was diagnosed only a few months ago after years of hell, so still have a lot to learn. I just hope, I can raise awareness for this debilitating disease that ruins so many women’s lives.

Hello world! This is me – Kate – a crazy, independent, and compassionate young lady who is living life the best she can with the tools she has!

THE BEGINNING

I was diagnosed with hydrocephalus (water on the brain) and

(missing part of Cerebellum, enlarged 4th ventricle in the brain) at five days old so I guess I’ve kinda been a spoonie my whole life without knowing it. I received my first shunt when I was 4 mo old.

HELL BREAKS LOOSE

My childhood was pretty normal until I turned 13 and started experiencing symptoms of a shunt malfunction, of course I didn’t know because this was my first malfunction. After my revision I developed an infection and had to have my shunt externalized then removed for a period of days. I don’t remember anything during those 5 days but apparently I refused to talk to the RNs, but answered any question asked by my mom or my surgeon…
Anyway after about a month I finally got home weak and tired but happy to be home still on antibiotics but home all the same! Then back in just before Christmas because my shunt migrated out of my ventricles, so I had to have emergency surgery. That surgery was done by at that time a 72 year old surgeon who is still in practice today and last I heard operating!

The rest of my JH and high school years were filled with emergency surgeries most of those where after middle of the night trips to the hospital and large quantities of medication to control my pain; which at many points was bad enough that I was throwing up.

LIFE CHANGES

I remember one time when I was about 15 or 16 going to the ER and having a Spinal Tap done to check the pressure in my head. My neurosurgeon at the time said it was so high that I should have been unconscious! Jokes on him because I was awake and apparently had the mouth of a trucker… I don’t remember a thing, but apparently I did have choice words for him.
During this time my mom was slowly dying of an aggressive form of Brain cancer, she passed when I was a sophomore and life changed even more than it had with the shunt stuff…

COLLEGE

At 19, my semester at college, I had an emergency brain surgery that left me paralyzed on the left side. Something had gone wrong and the shunt catheter had ended up in the grey matter instead of in my ventricles. I went through weeks of PT to regain movement in my left arm and leg. That all happened in October, by November I was using a walker and by December was walking with a cane in public and unaided at home. I was given the okay to drive again and life continued.
I was still pursuing a degree in nursing, working on fine muscle movements in PT trying to regain what I had lost. Then in 2009 while working a summer job as a CNA/caregiver I began having issues with back pain, I went to see my Neurosurgeon and it was decided that the lumbar shunt I had gotten as a teen should be removed because I was draining too much spinal fluid thus my brain didn’t have enough cushion.

ANOTHER ROUND

It was decided that the LP shunt had to come out and that I would do better with just my VP shunt. Unfortunately the outpatient surgery turned into several days that ended in me getting two VP shunts. Then I got another infection in my spinal fluid that took forever to diagnose and get rid of. After almost four months the infection was gone and I had spent over a month all together in the hospital. After the end of 2009 my optic nerve had been damaged and my vision impaired for life.
At that point I withdrew from school to figure out how to deal with everything I had been through and was still going through.

TIME PASSES

There is more to the story but I will share that chapter later, for now here are some take-a-ways from my story.

Don’t let anyone tell you that you can’t do something.

Don’t let anyone stand in your way.

Follow your dreams and don’t give up.

You may be rerouted a couple times but you will get to where you are meant to be.